Firstly, I’m well aware the topic of this blog isn’t
particularly new ground to tread. It’s fairly tired material and spouted on an
almost regular basis across health-sites and blogs. However as I’ve personally
been pretty unwell lately and have encountered almost all of the following
phrases, I felt a wee refresher was overdue. For that reason I’ve compiled a
comprehensive list of the 10 things people with chronic illness do NOT want to
hear. Please delight and disgust in equal measures, and utter them at your PERIL!
1. ‘But you don’t look sick...’
(See also: ‘You look
great! You must be feeling better!’)
Without a shadow of a doubt, the above phrase is the
resounding Number One (or should that be number 2?! LOLZ! TEEHEE!) on every
list of things NOT to say. It’s the
single most infuriating thing anyone can say to anyone with a chronic and
invisible illness. The frustration at these 5 words mainly stems from the insinuation
that you as the patient, may be either lying
at worst, or embellishing the truth at best. After many years of suffering from
Crohn’s Disease myself, I’m still not even sure what the correct response
should be when someone spouts this gem.
I’ve tried several retorts, from the faux-patient; ‘Well it’s an illness
on the inside so it can be hard to tell just looking at me..’ to the almost
explosive rage of ‘Are you calling me a liar?!’ Coincidentally, neither of
which the Judge thought were good enough grounds for beating my colleagues
senseless. Seriously though, it’s a hard statement to do anything with, and one
which shows seemingly no concern; just judgement. At least that how it comes
across in most cases. Invisible illnesses are at their most difficult when we,
as patients, have to attempt to express how much unyielding agony we are in
under the surface, when the outer shell looks like you’ve just stepped out of a
Maybelline commercial. Pain and a plethora of other symptoms can strike at any
time, completely unexpectedly in some cases, and without warning, so please
don’t assume the packaging matches the product within, without all the facts.
So what to say
instead? - How about asking
about our IBD if you don’t understand and would like to? Or if you don’t care
and just want to be a Bitchy McBitcherson about it, nothing at all is just as
good.
2. “My friend/colleague/family member
has it and she’s coping really well…/really badly…”
(See also: “You just
need to learn how to manage it”)
This comment and all its different forms can be incredibly
damaging to patients. It’s perhaps most detrimental to those who are recently
diagnosed and still unsure of the condition they have been lumbered with and its
magnitude. It’s a human instinct to share experiences, and knowledge. Having
things in common with others is one of the quickest ways to build a bond, so I understand
why those who hear that patients have IBD have an urge to share what they know
of it themselves. However, in my experience, these nuggets of information from
non-patients are often very harmful to our state of mind. In the case of a
comment implying someone they know is doing better than you, it almost implies
we aren’t quite trying hard enough, or that we are lying down to our illness. In
the case of hearing horror stories someone they know is doing much worse it can lead to panic, massive
anxiety and uncertainty about the future.
So what to say
instead? - “My friend is also a
sufferer, I’m always up for learning more about the condition so I can help you
both!”
3. “You’d feel better if you just
relaxed/took a holiday...”
(See also: “I read
about some alternative therapies, have you thought about trying...”)
First things first, we have thought about everything. There isn’t a treatment, or
potential medication left unturned in our quest for intestinal normality. But
our illnesses regrettably don’t have a cure. Patronising us with such comments
as ‘take a break’ won’t help. We’ll still feel awful and we’ll still have an incurable
illness. And no we’re not trying to be negative, just realistic.
So what to say
instead? - “Wish you could get a
break from your illness!”
4. “Why are you always tired?”
(See also: “Everyone
gets tired”)
Prolonged fatigue is an incredibly common symptom of most chronic
illnesses. Fatigue isn’t ‘just’ tiredness. It’s intense and unending exhaustion.
No amount of sleep is ever enough to shake it off. A nap or an extra hour in
bed here and there just won’t cut it. People who suffer from incurable
illnesses understand what it means to be TIRED. They feel they make collapse if
they don’t catch a few hours and yet it’s still never enough. When people question
this utter exhaustion it’s both upsetting and infuriating in equal measures. We
know everyone gets tired, but not everyone has everyday life to deal with and a chronic illness at the same time.
So what to say
instead? - “Anything I can do to
lighten your load?”
5. “You just need to make some changes
to your diet”
(See also: “Should you be eating that?”)
Please, please don’t
tell us what/where/when to eat. When we can
eat it’s like Christmas Day, and when we can enjoy a meal without a hint of
pain or nausea, it’s like we’ve reached VALHALLA. Food and drink and IBD patients
have a notorious love-hate relationship whereby we often struggle to maintain a
healthy weight. When we can eat, we can be utterly and almost instantaneously
floored by incredible abdominal pain, or find ourselves getting up close and
personal with the porcelain for the remainder of the evening. Concern about our
diets is natural for those who care about us but It’s very important we don’t feel
under scrutiny whenever we are eating in company.
So what to say
instead? - “What can I make you
to eat?”
6. “You’re lucky you’re always so thin”
(See also: “Have you
gained/lost weight?”)
Weight is a very delicate subject for IBD patients. We can
fluctuate from drastic and life-threatening weight loss, to piling on the
pounds through medications such as ‘hamster-cheek’ steroids. Losing weight is rarely a positive for us. In
fact it’s a sign things are going downhill health wise. When I was at my
sickest I had lost 3stone in a month and dropped 2 dress sizes, and most
horrifying, 5 bra sizes. It’s no fun being ‘skinny’ with an incurable illness.
So what to say
instead? - “How can I help you
get that weight back on?”
7. “It will get better, just be patient”
(See also: “You’ll
feel better after your op/meds/a good meal”)
Again the incurable part rears its ugly head. We won’t ever
get better. We may at some point feel healthier than when we’ve been at our
lowest medical ebb, however time won’t heal IBD. It’s not a cold or flu where
in a few days we will be fighting fit again, we’ll be fighting our conditions
for many, many years to come. And if that sentence alone sounds depressing,
imagine living with it.
So what to say
instead? - “I hope you start to
feel a bit perkier soon”
8. “Are you in the bathroom again?!”
(See also: “Must be
great to get some many extra breaks!”)
It may be hard to believe but IBD patients don’t actually
want to spend hour after hour in excruciating agony, clinging on for dear life
to a radiator or a sink or whatever is closest to hand. Just a heads-up, we aren’t
actually hiding in there, we are forced onto the porcelain throne through no
fault of our own. It’s actually not ideal for us to be ensconced in lavatorial
duties as we also have lives outside of our defunct insides.
So what to say
instead? - How about no comment at
all? Or perhaps a gentle question as to whether there’s anything you can do? It’s
not rocket science.
9. “You’re too young to be sick”
There is no age restriction on illness. IBD research has
shown it is most prevalent from teens to people in their 30’s. However like
most chronic illnesses it really can strike any age at any time. Therefore the
idea that age is a barometer of health is utterly redundant in most cases. IBD
has many other off-shoots of the condition such as arthritis and joint pain,
and funnily enough it’s no fun to be a teenager and having to sit down whilst
out at the local discothèque.
So what to say
instead? - “I feel for you!”
10. “It could be worse…”
(See also: “You should
consider yourself lucky”)
I’d like to think it goes without saying that patients with
any existing condition, and as a matter of course EVERY HUMAN BEING ALIVE,
knows that things could always be ‘worse’. But what a redundant concept that
very phrase is. I’ve never been sure what it’s meant to instil in the recipient;
grace, embarrassment, silent reflection? It certainly makes me want to silently
reflect on the bodily harm I could do to the person saying it, and not much
else.
So what to say
instead? - Nothing. How about a
hug?
